When People Tell Me My Baby With Down Syndrome Looks Tiny

When I’m out with my baby, Alyssa, I inevitably get asked the question, “How old is she?” When I say nine months, the response is usually, “She’s so tiny!”

I don’t need a reminder from anyone that my child is not an average size for her age.

I already have a daily reminder in the form of the 3-6 month outfits that fit my 9-month-old.

I get a weekly reminder at her doctor’s appointments when she’s weighed and measured. And yes, I know that even in comparison to her peers with Down syndrome she falls into the 90th percentile.

The words small, tiny and any of their synonyms bring up things I haven’t gotten over yet.

It reminds me when we found out that she was small in the womb before we had a Down syndrome diagnosis.

It reminds me of the weekly trips to her cardiologist and pediatrician where we would focus on her size and her need to grow before having open-heart surgery.

It reminds me of using formula — something I didn’t want to do — to increase the calories of my breast milk so she would gain weight faster.

It reminds me of four months spent in the hospital when she didn’t gain a single ounce from admission to discharge.

It reminds me that she was much smaller than we anticipated when it became necessary to repair her heart and how scared I was because of the importance we placed on her size up to that point.

I have anxiety each time she spits up. How many calories did she just lose? I dread each appointment to the gastroenterologist. Which formula will we try now? How many calories now? What volume now? Will she tolerate it?

I worry about her gastrostomy tube (G–tube). How long will she have it? Have I failed her by not being more vigilant about oral motor exercises and baby food?

And finally, like any other parent, there are days when I can tell that Alyssa grew overnight. Those days makes me miss my baby, and I realize how quickly time goes by.

Alyssa is my first child. She’s not small to me. Everything about her is part of my normal.

I realize that when people say she’s small or tiny, they don’t know any of this. They aren’t aware of my personal insecurities and anxiety. They aren’t aware of how much Alyssa has had to overcome to be the size she is.

When someone says how small or tiny my daughter is, I wish they would say this instead: “Nine months, really? She must be so strong.”

Rachel Danes Panfil is the mom of an incredible girl, Alyssa, and the wife of an amazing husband, Thomas. They also have a resilient hamster named Bo! Each day, Rachel learns a little more about patience, Down syndrome and medical complexities.